Gayle - my dad is now down 109 lb. in about 18 mo. Today when I came to see him he wouldn't even eat a crabcake - his favorite meal. He took one bite (after telling me this is what he wanted for lunch) and spit it out like a little kid. He ate 2 cherry tomatoes, 2 bites of ice cream and drank some apple juice. That was a big meal for him! The people in this ALF really do try to get him to eat but he is at the end, and I think his recent dislike of his favorite foods is indicative of that. I could certainly be wrong. Time will tell. He doesn't want to live like this and I think his body is telling us that through his lack of interest and also his sense of taste - everything he used to like he tells us tastes horrible and he won't eat it. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sat Oct 16, 2010 1:31 pm

galias

Joined: Sun Sep 05, 2010 4:46 pmPosts: 29

Re: Mother With LBD Who Is Rapidly Declining

Mockturtle: Yes she has just been on Aricept for approx a month. 5mg Robin: We have also seen a GI Dr. nothing mentioned about gastorperisis.Good one though we see Dr. in a couple of weeks for our followup I will mention. Thanks!!This gets so frustrating making the Dr.'s think.Lynn: My Mom sounds so much like your Dad re: the eating.

Packed up some of her things today getting ready for the move to ALF.have any of U spent the night at ALF. She is already freaking out of being alone.

Sun Oct 17, 2010 12:52 am

AnnieN

Joined: Sun Oct 04, 2009 10:18 amPosts: 276Location: Washington State

Re: Mother With LBD Who Is Rapidly Declining

Galias, I've spent many a night at the ALF in my mom's room. We store a thermarest camping mat rolled up in a corner and I unroll it and sleep on it, usually with a piece of clothing for a pillow. There's an extra blanket around. I don't actually sleep there much, I sort of doze. When she stirs I'm on the lookout for her to swing her legs out of the bed in preparation for getting up to go to the bathroom. That's when she is most vulnerable to falls. Often times she awakens and lifts her head and looks around. When her head hits the pillow again I know I can doze off.

When I'm there I close the door to her room. When I'm not there it stays open which is unfortunately noisier and with more light but someone would find out if she fell. We use a noise machine set to "rain" which she finds soothing.

We've spent a lot of time thinking about how much light she needs and adjusting where the lights are located. The light is on in the bathroom all night but the door is mostly closed. If the door were closed she could not open it. If she goes in there she needs to be able to see. We have a nightlight in the bedroom and light from the hall.

It takes a lot of planning to figure out how a room works best. Curtains, lights, room for the walker, toilet bars or commode, names on the back of everything and on every article of clothing (anything you want to keep). Good luck with the move. Annie

_________________Annie, daughter of brave Marie, dx 2007 and in ALF

Sun Oct 17, 2010 2:30 am

galias

Joined: Sun Sep 05, 2010 4:46 pmPosts: 29

Re: Mother With LBD Who Is Rapidly Declining

Thanks AnnieN. Not looking forward to this. Good idea for the night lights etc. I know here at our home I did all this so she can see. Funny assumed her new room would be no problem. I am freaking over having to sleep there. : ) Noises etc. Gayle

Sun Oct 17, 2010 3:53 am

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Mother With LBD Who Is Rapidly Declining

Annie, I think it's wonderful the thought and effort you have put into your mother's comfort in the facility. I am particularly interested in the 'noise machine' and am wondering if it would help my husband in his 'sundowning' hours. Guess I'll have to Google it. Thanks for the idea. [Since we also live in the Pacific NW, I guess 'rain' is at least familiar! ]

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sun Oct 17, 2010 10:22 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Mother With LBD Who Is Rapidly Declining

You can get the "white noise" machines at Radio Shack and probably other places. Last time I bought one it was only $11 and had about 6 choices of sound. Also, try the earplugs that are like a plastic putty type material. I have been using those for many years, every night, because I am a light sleeper. I get them at grocery or drug stores. They have worked wonders for me! Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sun Oct 17, 2010 2:38 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Mother With LBD Who Is Rapidly Declining

Thanks, Lynn! With us, the problem is not too much noise but finding some kind of soothing noise [we usually play classical music]. He finds TV noise really irritating [so do I] but music isn't always what he needs, either. I'll look into this gadget at radio shack.

BTW, Lynn, I've rematted your painting and have it hanging up now. It's beautiful. If I get around to it, I'll send you a photo of it. Hope you're having a pleasant trip.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

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